Posted by Bennie Sue (63.11.65.226) on January 17, 2001 at 10:07:07:
In Reply to: Is this the wrong site for me posted by Nancy D. on January 17, 2001 at 06:42:24:
If a person has CH as well as migraines we will be glad to share our experiences with him or her. Some of us have CH and migraines - and we do know the difference.
But we do not want to discuss migraine *at length* here because:
1. We are very distressed when we tell someone we have CH and receive ignorant replies such as "Oh, yeah, my uncle had migraines.
He took some aspirin and slept it off," or "My Aunt Sally had those" (she probably didn't have CH), or "I go on with my work despite a headache," or "Sure, all of us get headaches - no big deal."
This site was created by a man named DJ who was seeking support and understanding of his cluster headaches. He spent hours looking at Internet sites dealing with headaches in general. Because migraine is rather common and widespread (especially among women) , he found many sites dealing with that. But this was no help to DJ - his ailment was CH, a distinct condition with a different cause and different symptoms.
No one who has not experienced a bad CH attack can have any idea of how intense and unrelenting the pain can be. Very often migraine sufferers can take medication and then sleep for some hours and wake to find the pain gone. CH is quite different. The worst nightmare a clusterhead can imagine is to be in a body cast when an attack starts.
Some have accused us of being exclusive because we consider our ailment special. We consider it special, all right, but not in a positive sense. Anyone with CH would probably trade it for a number of other conditions. Sometimes we even consider ourselves especially cursed.
2. The second reason we do not like to discuss migraine here is that most of us are not sufferers of that ailment. And we do not have much experience to share. We do feel an urgent need to make contact with those who really know what we are going through. If you read the Guest Book entries you will see that most who sign are overwhelmingly grateful to find some others who can relate to their special case. DJ started this support site in order for CH sufferers to have a home and family of people with the same symptoms and problems. When we are experiencing a CH cycle, we are not particularly interested in contacting someone with migraine or temporal arteritis or arthritis or whatever - because we cannot relate to them in the same way.
I hope this clarifies our objectives somewhat. We have very special needs that few others recognize. That is why we are working for OUCH. If we can make the general public aware of our problems, we might be able to promote more research into CH; we might be able to get our insurance companies to pay for oxygen treatment (even though CH is not a respiratory disease); we might get better treatment in the emergency rooms; we might get easier referrals to a neurologist who knows how to treat CH; we might be able to hold jobs and not be forced to apply for disability benefits; we might get more respect and understanding from co-workers, friends, and families.
Because we are small in number we must focus and work a little harder to help our own.